Every year, ELA organizes a meeting in Paris which brings families and researchers together affected by leukodystrophies. This event could not take place in 2020 due to thethe global pandemic. The health context having made it impossible to organize the Families/Researchers meeting in person, ELA has had to adapt to allow this long-awaited meeting by families.
A first in ELA’s history
For the first time, ELA has organized a virtual family meeting, with the support of the CNSA (the French National Solidatity Fund for Autonomy), ORCHARD Therapeutics, and Autobahn Therapeutic. The meeting took place on the afternoon of 27 and 28 March, and welcomed the international community of patients affected by leukodystrophy. A simultaneous translation system in 5 languages (German, English, Spanish, French, Italian) allowed a large number of people to follow the presentations easily and live. It brought together some twenty different nationalities, testifying to the universality of the disease and the expectations of families around the world. Four workshops were held, 2 per half day, and covered all pathologies. About twenty researchers took part in the meeting, and gave an update of the progress of their work, and hopes of treatment. A time for discussion was allowed for the participants to ask their questions.
Bringing patients and their families together to accelerate research
One of the major objectives of ELA International is to bring patients together at a global level, an indispensable condition for accelerating research. As President of ELA International, Guy Alba points out: “If we are not able to bring patients together when we start clinical trials, all of this is pointless. To test new treatments, it will take as many patients as possible to build cohorts and conduct these trials under good conditions. Only a structure like ELA International can do it for the benefit of all, because it is independent, because it is disinterested, because it has no conflict of interest, and because it represents all patients.”
With this new international meeting format, patients from all over the world are gathered around the researchers and receive the same information at the same time. On this occasion, Guy Alba recalled the importance of Leuconnect, a clinical research support platform developed by ELA International that brings patients and their families together. He invited the largest number to register on https://www.leuconnect.com to be part of the Leuconnect community.
This innovative and large-scale format provided by ELA has satisfied all participants and has once again given the opportunity to families to gather around the researchers.